Huntington's Disease Association

Improved understanding of Huntington’s and the Huntington’s Disease Association's role with the general public.

We worked with the BBC on the continuing storyline of Dr Ethan Hardy who found out he was positive for the Huntington’s disease gene. The actor George Rainsford who plays the character is now a patron of the Huntington’s Disease Association. The community were delighted to see Huntington's disease mentioned on prime-time TV. Working with the BBC helps us to ensure the disease is portrayed in the correct way.

Huntington's Disease Awareness Month May

For Huntington's disease awareness month, we highlighted the impact that Huntington’s disease has on mental health with the campaign, #HuntingtonsInMind.

The campaign raised awareness about the mental health impact that a diagnosis of Huntington’s disease has on individuals and their families. We asked people from the Huntington’s community if they would like to share their stories, we were so thankful to the community who were so willing to do so.

The campaign hashtag #HuntingtonsInMind has a dual meaning, both looking at mental health and Huntington's being in the forefront of people’s minds.

Three videos were released during the month of May capturing the lived experience of people in the Huntington’s community and discussing the difficulties they had with mental health and accessing support.

A project group was set up across the charity to drive the campaign. We were delighted when George Rainsford agreed to be a spokesperson for the campaign, the timing of the campaign was a key moment in Casualty's storyline meaning George spoke about the campaign on ITV’s Loose Women and BBC Morning Live. This gave the campaign in TV terms alone a reach of over two million people. Additional press coverage included Metro papers, The Independent, Daily Express, Pick Me Up magazine an opinion piece in the Yorkshire Times and features in press aimed at professionals including The Carer, NR Times and Practice Nurse. The estimated total reach of all the press coverage was over 100.8 million people. It is an honour to be able to share people's stories as the cornerstone of the campaign. Our heartfelt thanks to everyone who contributed. The legacy of the campaign continues the videos hosted on our YouTube channel have been watched over 35,000 times.

During the month of May, we organised webinars about mental health as part of the #HuntingtonsInMind campaign. The momentum of the campaign became a call to action for the community. Working in partnership with the Scottish Huntington’s Disease Association, and Northern Ireland Association over 100 signatures were gathered for an Early Day Motion in Parliament, to look at:

“Calls on health and social care providers throughout the UK to expand specialist Huntington’s disease services and access to mental health and other essential support in order to help those living with Huntington’s disease and their families in the community.”

Huntington's in mind campaign

Online presence

Website

Thanks to funding from UniQure a pharmaceutical company, we were able to update our website, aligning it with the community's needs and preferences. The new look website was launched in April, with initial feedback positive. The new website also allows us to update information easily meaning our updates can be quicker allowing us to keep the community informed.

YouTube

Our channel continued to grow giving members of the community a chance to view webinars they were unable to attend. The platform has been used to share people's stories, the content has really resonated with the community. Through the power of sharing stories, we have been able to reach new people. Becki’s story sharing her experience of living with Huntington’s disease and how her Specialist Adviser has supported her has been viewed over 25k times. Total views for the year on our YouTube channel are over 35000 times. With 339 subscribers on our YouTube channel, social media plays a key role in increasing people’s understanding of Huntington’s disease.

Social Media

With the appointment of a Social Media Officer, we were able to improve how we communicated digitally. This enabled us to develop new strategies for each social media platform. Key achievements include: